Is ‘User Involvement’ used to keep people disempowered?

I have been involved in User Involvement in one way or another for the last 20 years and it is important to say I am not against the principle at all. However, a few weeks ago I briefly saw a photo of a slide of a title of a paper presented somewhere by Peter Beresford, and it suddenly made me realised that the way user involvement is often implemented is a con, simply designed to keep people disempowered.

After 25 years experience in any field, I should be at the top of my game and paid accordingly, but when it comes to dysability, the being paid part is not there. If I was non-dysabled, then certainly the big fat salary would be on the table. But as a dysabled person, I am supposed to feel grateful that I have a voice in issues that affect me.

‘Service Users’ are starting to be paid for their time but getting paid as an ad-hoc contributor is time-consuming and bureaucratic, and most importantly not comparable to my non-dysabled peers. I have sat on too many committees where I have the greatest experience and expertise, but I am the only one not being paid a middle-class salary.

Is user involvement simply tokenistic? By calling us users rather than partners, it is simply a way to drain our expertise from us, often to improve their own career prospects, without paying us? And who is controlling the agenda?

I have reached the conclusion that user involvement is now simply an exercise to disempower us, by ensuring the professionals keep the control. And I fear because ‘user-led’ organisations have carved their survival by paying the user involvement game, reinforcing dysabled people as unpaid experts, they are not the way forward.

Dysabled people can no longer be perceived as the experts simply because they have impairments. I also do not believe anyone can represent ‘all dysabled people’ since it is an issue of understanding, not a democracy. We need dysabled professionals who are experts in dysability issues, and paid properly to convey relevant information to organisations who are required to know about these issues.

Lets move beyond user involvement, and start having professional engagement on dysability issues so those of us who know what we are talking about can be properly paid for our experience and expertise.


– If you like what I say, have a look at my website at or follow me on twitter, @simonstevens74

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